Families with Special Needs Kids Need Support

Speaking Out

BY KATHI SILVA

Raising children in the Foreign Service is a lot like gardening—we provide a rich environment for our children with all the right conditions and hope they will bloom. But as gardeners know, there is a lot of adapting and adjusting to whatever conditions may arise, and our plants don’t always grow in ways we expect.

Good gardeners do what they can to establish strong roots, provide a rich environment of support for their growing plants and create a plan and a system that responds to unpredictable factors out of their control. For families with special needs children, this system is even more important.

In recent years the number of children in the United States diagnosed with special needs is rising, and this trend is also seen within the State Department. Until a few years ago, thanks to a positive relationship with the Office of Medical Services (MED, now the Bureau of Medical Services) and the support and flexibility MED gave us to “grow our gardens,” the experience of raising a special needs child overseas was mostly a positive one.

As international schools become more inclusive and tele-therapy gains in popularity, there are more options than ever before to address special needs overseas. Thus, the challenges for families with special needs children overseas should be increasingly manageable.

Yet for the past couple of years the experience of Foreign Service families with special needs children has been the opposite.

Why Reduce Support?

In the June 2016 Foreign Service Journal, Maureen Danzot and Mark Evans wrote an important Speaking Out column about the fact that parents were increasingly having a hard time accessing Special Needs Education Allowance (known as SNEA) funds and getting a say in the medical clearance options for their children. Since then, there have been numerous actions on behalf of, and by, disgruntled parents in an effort to resolve these concerns.

A parent advocacy group, the Foreign Service Families with Disabilities Alliance, was created in 2016 with the goal of providing a unified voice for families dealing with MED issues. When the alliance’s suggestions were not answered and the number and types of complaints were serious enough, AFSA got involved by writing memos and attending meetings with MED to mediate parents’ complaints.

The State Department Office of Civil Rights is addressing a complaint from a Foreign Service employee who argues that some of MED’s current practices are disadvantaging Foreign Service members whose dependents have special needs. This, he says, is a violation of the Americans with Disabilities Act. The case is likely to open the door to many similar complaints.

The disenfranchisement of Foreign Service families by MED, and the seemingly haphazard way it is handling clearances and educational allowances for our special needs children, have gone public. More people are aware of the problem, but has anything changed? Not in the direction families were hoping.

Problems Grow

Families are feeling even more frustrated as the problems continue to build and MED remains silent. It’s not only nearly impossible to work with MED to develop flexible solutions, parents say, it is also getting harder to get accurate information about how MED makes its decisions and what, if any, procedures it is following. There is also a problem with appealing decisions, as there is no good appeals procedure in place.

Parents are facing increasing pressure to keep their children in the United States, often having to choose between their career or keeping the family together. For instance, Class 5 medical clearances, which restrict the child to living in the United States, are becoming more commonplace. In many cases, dependents are given Class 5 in spite of their doctor’s opinion that they would be fine overseas, and despite the fact that the parents have provided evidence that they can obtain the services they need at post.

Some parents say this is an “easy way out” for MED, since the family is no longer its responsibility once they have been forced to return stateside. One Foreign Service parent navigating the SNEA complexities offered a possible explanation: “My impression is that MED has a chronic staffing shortage, and their response is to lighten case workload by pressuring or forcing folks to return to D.C. for PCS [permanent change of station] assignments.”

The disconnect between MED and the families they serve is greater than ever. Whereas each family used to be assigned a case worker to deal with directly, today any inquiries go to a MED distribution group and are answered with an auto reply. One parent noted that this “hide-and-seek” makes it difficult to plan—whether it is for SNEA travel, PCS or authorization for a new therapy.

Parents are facing increasing pressure to keep their children in the United States, often having to choose between their career or keeping the family together.

Parents who have worked with MED for many years and have had clear, longstanding and previously approved support must now wait for months to get answers, and they are often shocked to learn that MED has arbitrarily cut the services that had been supporting their children in years past, services that allowed them to live successfully overseas.

Other parents say MED leaves them feeling like bad parents, blaming them for irresponsibly taking their children abroad. Many parents feel that MED is no longer helpful or concerned about their child’s welfare, and they are desperate for changes in how the system is currently running.

MED has not responded to several requests to explain its side of the story, claiming the bureau is too short-staffed to take the time to address these issues, which they feel have already been addressed. Leaving families with an information vacuum while the backlog grows and decisions about our children are made, seemingly arbitrarily and without our input, is not helping at all.

Besides causing unnecessary stress and strain on families, this situation has caused several families I’ve spoken with to rethink their careers in the Foreign Service. As one Foreign Service mother explained: “I have 16 years in the Foreign Service, but I am honestly considering quitting after this tour. I don’t want to be held hostage to MED anymore.” Potential new hires will think twice about joining if their families won’t be supported.

To Fix the System, Build a Partnership

The current head of MED’s Office of Child and Family Programs, Kathy Gallardo, wrote in the September 2016 Foreign Service Journal: “All CFP processes work best when there is a true partnership between parents, Foreign Service medical officers overseas and the various administrative components in the department positioned domestically and abroad.”

We parents wholeheartedly agree, but we also believe that Dr. Gallardo’s words must be translated into action, as this is definitely a broken part of the system.

MED should partner with regional medical officers/psychiatrists (RMO/Ps), the Office of Overseas Schools and outside experts in their fields to create a panel within MED to determine SNEA eligibility and clearances.

Parents should be allowed to share what they feel is best for their children, and this information should carry weight in the decision process. There needs to be a transparent and fair appeals process when parents disagree with MED’s clearance decision, and that appeal needs to be outside of MED’s authority.

Develop SOPs and Public Guidelines

MED’s unwritten changes in policy and the consequent negative effects, as well as the current information vacuum, are causing harmful speculation and frustration. New and veteran Foreign Service members alike are confused and frustrated by the lack of information or the mixed information they receive. There are no standard operating procedures to help families navigate. There has been no formal change in the regulations to which parents can refer for guidance.

Parents should be able to access written guidelines on how, when and with whom to coordinate the needs of their children. Procedures should not change in the middle of bidding season or without sufficient time for parents to adjust to new guidelines. There should be proper procedures in place to appeal MED decisions, as well.

If staffing shortages are an issue, MED should seek out impartial consultation on how to streamline procedures or reduce workload without sacrificing quality of service.

How to Keep Families Overseas

MED should be more open-minded and look at the whole picture of the family’s health and well-being. In many cases, for example, a small, international school in a country where kindness is valued over competition will be a better environment for a child with learning difficulties than a large public school in the United States. Moreover, modern technology has made it possible for children to receive tele-therapy from anywhere in the world, and this should be a viable option reimbursable with SNEA.

The affordability of housekeepers or other help at many overseas posts gives parents more time to dedicate to their special needs children, and this quality of life issue is an important part of the equation.

MED’s unwritten changes in policy, and the consequent negative effects on Foreign Service families with special needs children, have been an ongoing issue for almost two years now, with no sign of improvement. State is at risk of losing valuable employees who are not willing to sacrifice their family’s well-being or their rights as parents to have a say in what is best for their children.

To date there has been no explanation of the changes and no evidence that they are due to budgetary issues, abuses of the previous system or a need to streamline bureaucracy. We are left with too many unanswered questions, and the frustration is mounting.

Parents are not asking for the moon and the stars. We just want our voices to be heard and respected. We want to be able to serve our country as members of the Foreign Service, knowing that our families have the support they need. Give us back the customer service, empowerment and flexibility that we used to enjoy with MED. We need these tools to help our gardens flourish.

Kathi Silva is married to a Foreign Service officer; they have served together in Montevideo, Belgrade, Caracas, Pretoria, Paris and Washington, D.C. She has worked as a freelance editor, a USAID contractor and a Community Liaison Office assistant at previous posts and is currently completing a master’s degree online. Kathi and her husband have three children, two of whom have led her into a new world of children with disabilities and given her more than 15 years of experience raising happy, resilient, special needs diplokids.